Posted , 7 users are following.
Hi. I'm very confused. I know my Drs think it doesn't matter whether it is straight RA or palendromic but it does matter to me. Would you be RF positive, anti CCP positive and high ESR and CRP with palendromic? My GP has never heard of it. Is it possible to have both conditions? I just want to know if I've been misdiagnosed with RA! Very frustrating. Any help out there? X
0 likes, 10 replies
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tory38006 elle09679
Posted
Hi Elle,I know it is confusing to be going through the unknown.
It will all pan out in time.These conditions can be so closely
related and yet need a total different approach medically.
I have fibromyalgia and undiagnosed possible pmr or sero-
negative ra.Nothing ever shows up on my blood work,no
inflammation markers but yet I have the pain and slight
swelling in hands,wrists knees and feet (bilateral) but some
times pain is onesided.I had to take pictures each time
my hands or wrists or feet were red and swollen to show
my rheumatologist what was going on.Then a year later
I get hit with symptoms of pmr.Both upper arms,thighs
and hips hurt like nothing I ever felt before.So maybe it
is possible to have both.I am on plaquenil right now to see
how well it will help and so far in last 7 months it has helped.
My husband has ra severely and has all the markers in blood
but has never had much swelling.We all carry these diseases
in our own way.Which is why it can be so hard at first to
figure out.I'm sure others will comment and will help.
Anhaga and Eileen are awesome.Very knowledgeable ladies
EileenH elle09679
Posted
Palindromic just means that it comes and goes:
"Palindromic rheumatism is a form of inflammatory arthritis. It's also known as palindromic arthritis. People who have it get attacks of joint pain and inflammation. These flare-ups start in one joint but may spread to others before settling down completely. The joints appear normal between attacks. That is the difference from straight RA and most forms of inflammatory arthritis - people with palindromic rheumatism usually have no symptoms in between attacks. People with the other conditions have joint problems most of the time, although the level of the problem may vary."
The label really isn't that important - often you may get one label at first and it be changed later. Sometimes RA starts as palindromic arthritis - you have attacks and they then disappear after a few days or weeks and your joints are still perfectly undamaged. Years later the inflamed joints may return but don't go away and the inflammation is there all the time - and sometimes it turns into RA where there is typical damage to the joints. Or it might be another form of inflammatory arthritis.
The blood tests are just information for your doctors. You can be RF positive and not have RA, you can have RA without your RF being high, then they call it sero-negative. The ESR and CRP are just indicators that there is inflammation present in your body - but they can be high with a lot of other disorders, not just RA. All that matters is that you are treated properly - and the drugs used are much the same for all forms of inflammatory arthritis though some sorts respond better to some medications than others. They just need to find the one that works best for you.
There isn't an info page on this site for palindromic arthritis so I will post again with some links - they will be taken for moderation if I put them here but this will give you a bit of info straight away. If you have other questions do ask and I or others will try to answer them - but none of us here are doctors.
Are you saying your GP hasn't heard of palindromic rheumatism? Perhaps you should teach him how to use google!
shirlee86000 EileenH
Posted
Yes you have explained it really well, thank you so much for that, I was hoping to come off methotrexate as it just scares me for the side effects, I have just took my 4th dose this week and this is my second time on it as my enzymes were raised last time but they are trying me again. I feel quite well actually, I had an injection of steroid 4 weeks ago and the pain thankfully left me a few days later. I worry though as when I had to come off methotrexate the pain came back so bad, it was actually a lot worse than diagnosis time back in may/June, fingers crossed it works this time, thank you once again for clearing some things up for me
EileenH shirlee86000
Posted
I have friends who take mtx and they have no trouble with it at all, far fewer side effects than they had with the higher doses of pred they had needed. They will keep a close eye on you though. Good luck
Rowbirdie EileenH
Posted
From your explanationit seems that RA being the joint damaging condition, it s important to have treatment first and foremost.
tory38006 EileenH
Posted
put :0)
shirlee86000 elle09679
Posted
I have palendromic arthritis and my rheumatologist says that most people turn to the rheumatoid arthritis eventually, I have read that palendromic is quite rare and does not distort the joints, I don't know how true this all is and if anyone else has heard these things it would be interesting to know. Do you get the red marks where your pain is ? I have on my hands, I am on methotrexate and it certainly helps the pain
EileenH shirlee86000
Posted
I hope I've explained it above shirlee - and I also hope the moderator will approve the links I've posted as they explain the difference between PR and RA and mention that PR can sometimes progress to RA.
EileenH elle09679
Posted
Here are a couple of links about palindromic rheumatism.
http://www.arthritisresearchuk.org/arthritis-information/conditions/palindromic-rheumatism.aspx
https://www.arthritiscare.org.uk/what-is-arthritis/types-of-arthritis/104-palindromic-rheumatism
This link:
http://www.arthritis.org/about-arthritis/types/palindromic-rheumatism/
explains that about half of patients with PR go on to develop RA and using the right treatment may prevent that.
In some ways, PR is an acute illness that keeps recurring. RA is a chronic one that is there all the time. But don't worry about that label - you have an inflammatory arthritis, your doctor is telling you that at the moment it is coming and going but that may change. GPs aren't specialists - he probably saw the symptoms and thought "RA", the rheumaotlogist sees it a bit differently.
ihavenonickname elle09679
Posted